Hi (StupidAssCancer) Alys,
I'm sorry you are going through this hell. I irrigate everyday and it is not a life changer really, don't stress if you end up going this route. I am 41, fit and was in a real battle re bags etc but the irrigation has proven to be on the whole virtually the same as it used to be, so to speak. I will give you a few insights if I could to put you at ease in case you go down this track, or looking at your post date you might already be there.
I had lower rectal cancer diagnosed last July '13, Xeloda chemo and radiation in Sydney, Australia up until surgery early Dec. '13. One of ten lymph nodes had a bug in it so they carpet bombed me with IV chemo to ensure no stragglers were left. So far so good. I have not had to deal with the issues of reversal that I have read in your post, what a nightmare that is.
As soon as chemo finished I started irrigating. I do it every morning, I think every second day is just too long, and a bit gross with all that being kept inside. Key points:
- it takes me literally 30 minutes at the very outside to do, not the 45mins to 1hours I had been told
- it is very straightforward
- i use a Coloplast plug which doesn't balloon under a shirt or business suit like a bag with gas in it does
- the plug and stoma caps have charcoal filters to greatly minimise gas smell
- I run, fly light aircraft, Crossfit, surf, ski and a lot of open water and pool swimming without any issue, certainly far less issue than I had with a bag
I irrigate in the morning, it really takes only a few minutes longer than it used to (pre butt removal!). If you are organised, all the bits and pieces will be in the bathroom, I run the hot tap, stick on the irrigation cone into my stoma to flood your insides (5-10 mins max), grab the morning paper (whilst seated on the toilet), don't finish articles because the process of outputting is so quick (5-10 mins max), put a peg on the end of the bag, jump in the shower. Occasionally some minor output will come out into the pegged-off bag, but by then you have virtually finished in the bathroom, rip the bag off, use a stoma cap or now I use a plug and don't touch it until the following morning.
A caveat is that when you have eaten a dodgy taco or curry, you will know about it so I put a larger stick on bag, some tissues and a small garbage bag into a slim camera case and keep it with me. The runs tend to happen when you are out to dinner don't they. A camera case is a good disguise I find.
We are currently on holiday in Hawaii, I didn't want to use a plug or a bag at the beach, so I bought some Band Aid waterproof sticking plasters. My self esteem has rocketed, no one would ever know I had a stoma. The band aid just covers the stoma, but the point is the chance of a leak is now so minute that If I did have a leak then it would be minor and a quick run to the car to get the larger bag and away you go. Diarrhoea episodes are not fun but they have been very rare i.e. once every maybe 5-6 weeks. Before irrigating i bought a "Stealthbelt" which covers the bag for when you are at the beach or a pool or the gym. They are brilliant, Google their site.
Hopefully you don't have to have the surgery, but if you do it is a nuisance but equally not a big deal really, much better than the alternative in my case.
Call out if you want to discuss. I might put together a YouTube video I think, as gross as it is, it might throw out there some things that work for me.